Civic Intelligence

Phelan Mcdermid Syndrome Foundation

EIN 04-3673104 • 501(c)3 • Osprey, FL

Pub. 78 Eligible

Profile

The mission of the Phelan-McDermid Syndrome Foundation is to make today better and the future brighter for everyone living with Phelan-McDermid syndrome - from the moment of diagnosis to the delivery of treatments and cures.

8 Sorrento DriveOsprey, FL 34229

pmsf.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

51st percentile

0.07x

Higher debt load relative to assets than 51% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Liabilities / Revenue

58th percentile

0.12x

Higher debt load relative to revenue than 58% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Net Margin

65th percentile

13%

Higher net margin than 65% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Top Officer Pay

74th percentile

$120,416

Higher top officer pay than 74% of similar nonprofits.

Top officer pay equals 9.7% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Asset Growth

55th percentile

5.3%

Faster asset growth than 55% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2024 to 2025

Revenue Growth

29th percentile

-4.7%

Faster revenue growth than 29% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2024 to 2025

Balance Sheet
Liabilities / Assets51st percentile

Assets

Up

$2,220,653

Up $110,784 (+5.3%) from 2024

Liabilities

Down

$154,468

Down $56,059 (-27%) from 2024

Net Assets

Up

$2,066,185

Up $166,843 (+8.8%) from 2024

Operations
Liabilities / Revenue58th percentileNet Margin65th percentile

Revenue

Down

$1,245,861

Down $61,023 (-4.7%) from 2024

Expenses

Down

$1,082,374

Down $355,190 (-25%) from 2024

Net Income

Up

$163,487

Up $294,167 (+225%) from 2024

Trend Graphs

Balance Sheet Trend

Asset Growth55th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$3.0M$2.0M$1.0M$0Assets 2011: $420,902Liabilities 2011: $58,022Net Assets 2011: $362,8802011Assets 2012: $423,996Liabilities 2012: $89,144Net Assets 2012: $334,8522012Assets 2013: $562,228Liabilities 2013: $59,474Net Assets 2013: $502,7542013Assets 2014: $826,825Liabilities 2014: $275,255Net Assets 2014: $551,5702014Assets 2015: $1,047,572Liabilities 2015: $283,140Net Assets 2015: $764,4322015Assets 2016: $1,193,813Liabilities 2016: $203,367Net Assets 2016: $990,4462016Assets 2017: $1,197,242Liabilities 2017: $163,062Net Assets 2017: $1,034,1802017Assets 2018: $1,423,117Liabilities 2018: $89,279Net Assets 2018: $1,333,8382018Assets 2019: $1,427,059Liabilities 2019: $15,392Net Assets 2019: $1,411,6672019Assets 2020: $1,639,670Liabilities 2020: $123,193Net Assets 2020: $1,516,4772020Assets 2021: $1,940,384Liabilities 2021: $24,329Net Assets 2021: $1,916,0552021Assets 2022: $2,113,920Liabilities 2022: $59,480Net Assets 2022: $2,054,4402022Assets 2023: $2,243,009Liabilities 2023: $216,181Net Assets 2023: $2,026,8282023Assets 2024: $2,109,869Liabilities 2024: $210,527Net Assets 2024: $1,899,3422024Assets 2025: $2,220,653Liabilities 2025: $154,468Net Assets 2025: $2,066,1852025

Highlighted filing

2025

Assets$2,220,653
Liabilities$154,468
Net Assets$2,066,185
Open 2025 Filing

Operations Trend

Revenue Growth29th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$1.5M$1.0M$500K$0-$500KExpenses 2011: $366,1222011Expenses 2012: $409,8252012Revenue 2013: $452,384Expenses 2013: $284,482Net Income 2013: $167,9022013Revenue 2014: $911,724Expenses 2014: $862,908Net Income 2014: $48,8162014Revenue 2015: $1,137,997Expenses 2015: $925,135Net Income 2015: $212,8622015Revenue 2016: $1,272,080Expenses 2016: $1,046,066Net Income 2016: $226,0142016Revenue 2017: $1,162,999Expenses 2017: $1,119,265Net Income 2017: $43,7342017Revenue 2018: $1,199,078Expenses 2018: $899,420Net Income 2018: $299,6582018Revenue 2019: $656,384Expenses 2019: $578,555Net Income 2019: $77,8292019Revenue 2020: $560,200Expenses 2020: $455,390Net Income 2020: $104,8102020Revenue 2021: $897,002Expenses 2021: $497,424Net Income 2021: $399,5782021Revenue 2022: $853,648Expenses 2022: $715,263Net Income 2022: $138,3852022Revenue 2023: $1,062,761Expenses 2023: $1,098,819Net Income 2023: -$36,0582023Revenue 2024: $1,306,884Expenses 2024: $1,437,564Net Income 2024: -$130,6802024Revenue 2025: $1,245,861Expenses 2025: $1,082,374Net Income 2025: $163,4872025

Highlighted filing

2025

Revenue$1,245,861
Expenses$1,082,374
Net Income$163,487
Open 2025 Filing

Filings

Most recent year

2025 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$2,220,653
Liabilities
$154,468
Net assets
$2,066,185
Revenue
$1,245,861
Expenses
$1,082,374
Net income
$163,487
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Detailed filing. Detailed filing data is available for this year.$2.22$0.15$2.07$1.25$1.08$0.16
2024Detailed filing. Detailed filing data is available for this year.$2.11$0.21$1.90$1.31$1.44$0.13
2023Detailed filing. Detailed filing data is available for this year.$2.24$0.22$2.03$1.06$1.10$0.04
2022Detailed filing. Detailed filing data is available for this year.$2.11$0.06$2.05$0.85$0.72$0.14
2021Detailed filing. Detailed filing data is available for this year.$1.94$0.02$1.92$0.90$0.50$0.40
2020Detailed filing. Detailed filing data is available for this year.$1.64$0.12$1.52$0.56$0.46$0.10
2019Detailed filing. Detailed filing data is available for this year.$1.43$0.02$1.41$0.66$0.58$0.08
2018Detailed filing. Detailed filing data is available for this year.$1.42$0.09$1.33$1.20$0.90$0.30
2017Detailed filing. Detailed filing data is available for this year.$1.20$0.16$1.03$1.16$1.12$0.04
2016Detailed filing. Detailed filing data is available for this year.$1.19$0.20$0.99$1.27$1.05$0.23
2015Detailed filing. Detailed filing data is available for this year.$1.05$0.28$0.76$1.14$0.93$0.21
2014Detailed filing. Detailed filing data is available for this year.$0.83$0.28$0.55$0.91$0.86$0.05
2013Detailed filing. Detailed filing data is available for this year.$0.56$0.06$0.50$0.45$0.28$0.17
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.42$0.09$0.33$0.41
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.42$0.06$0.36$0.37
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2025 to Dec 31, 2025
Signed
Mar 6, 2026
Return Version
2025v4.0
Gross Receipts
$1,245,861
Mission and Program Overview

Mission

The mission of the Phelan-McDermid Syndrome Foundation is to make today better and the future brighter for everyone living with Phelan-McDermid syndrome - from the moment of diagnosis to the delivery of treatments and cures.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments-$1,548,970-
Investments in Publicly Traded Securities$571,073$401,144▼ $169,929
Cash and Non-Interest-Bearing Accounts$1,452,626$212,923▼ $1,239,703
Prepaid Expenses and Deferred Charges$12,720$43,366▲ $30,646
Pledges and Grants Receivable$73,450$14,250▼ $59,200
Land, Buildings, and Equipment, Net$0--
Total Assets$2,109,869$2,220,653▲ $110,784
Liabilities
Grants Payable$190,696$100,000▼ $90,696
Accounts Payable and Accrued Expenses$19,270$37,256▲ $17,986
Deferred Revenue$561$17,212▲ $16,651
Total Liabilities$210,527$154,468▼ $56,059
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$1,894,920$2,062,385▲ $167,465
Net Assets With Donor Restrictions$4,422$3,800▼ $622
Total Net Assets Fund Balance$1,899,342$2,066,185▲ $166,843
Total Liabilities and Net Assets / Fund Balance$2,109,869$2,220,653▲ $110,784
Compensation and Service Providers
Top Officer Pay74th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Diane LinnehanChief Operating Officer/Co-interim CEOFT$117,089$3,327$120,416
Lauren SchmittChief Science OfficerFT$108,138$3,228$111,366
Shira JohnsonChief Development Officer/Co-Interim CEOFT$54,382$1,631$56,013
Priscilla HackstadtChief Financial OfficerPT$48,022$1,402$49,424
Rhonda BlumenthalChief Executive OfficerFT$30,446$913$31,359

Board Members and Trustees

NameTitle
Denise CrodenPresident
Ben HolocherVice President
Catherine Valcourt-PearceDirector
Dr Lori LeviDirector
Eden RiveraDirector
Heidi Grabenstatter PhDDirector
Rebecca BuchananDirector
Lisa BrownSecretary
Michael CentoTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,060,585
Program Service Revenue
$14,143
Investment Income
$96,976
Other Revenue
$74,157
All Other Contributions
$920,071
Change in Net Assets
$163,487

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,245,861
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$3,356
Other Revenue Adjustments
$0
Total Revenue per Audited Statements
$1,249,217
Total Revenue per Form 990
$1,245,861
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$608,197
Other Expenses$369,177
Total Fundraising Expense$198,735
Grants and Similar Amounts Paid$105,000
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Current Officers, Directors, Trustees, and Key Employees$236,613$67,007$47,509$351,129
Fees for Services Other$112,150$23,831$78,004$213,985
Other Salaries and Wages$146,120$31,930$21,759$199,809
Grants to Domestic Orgs$100,000--$100,000
Payroll Taxes$29,407$8,994$5,432$43,833
Information Technology$21,883$15,617$5,434$42,934
Travel$40,204$0$0$40,204
Office Expenses$3,237$7,996$20,843$32,076
Pension Plan Contributions$8,166$2,988$1,730$12,884
All Other Expenses$1,145-$10,967$12,112
Occupancy$0$8,100$0$8,100
Insurance$202$7,567$0$7,769
Advertising$641$0$6,977$7,618
Foreign Grants$5,000--$5,000
Conferences and Meetings$4,299$0$80$4,379
Other Employee Benefits$0$542$0$542
Total Functional Expenses$709,067$174,572$198,735$1,082,374

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$1,082,374
Total Expenses per Audited Statements$1,082,374
Total Expenses per Form 990$1,082,374
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
Other Expense Adjustments$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Children's Hospital of Los AngelesLos Angeles, CA501(c)(3)To identify diagnostic biomarkers in up to 30 individuals with Phelan-McDermid syndrome who present with neuropsychiatric disease. To determine whether these individuals exhibit distinct cytokine, proteomic, and metabolomic profiles in the serum and cerebrospinal fluid indicative of systemic and/or central inflammation. To evaluate markers of cortical and white matter disruption using magnetic resonance imaging and electroencephalography.$100,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$73,622
Fundraising Direct Expenses$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Phelan Lucky$102,026$72,144$0$72,144
Total Events$102,026$72,144$0$72,144
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“Form 990 and any required supplemental schedules are reviewed in draft form by the Finance Committee. Finance Committee approves and recommends that the board accept the draft of the 990. Board members are provided a draft of the 990 and allowed one week to comment, request changes, and ask questions, after which time the 990 is filed electronically.”

Form 990, Part VI, Section B, Line 12C

“Board members, committee chairs, key volunteers and all employees are required to sign an annual statement acknowledging they have received a written conflict of interest policy and are in compliance with the policy.”

Form 990, Part VI, Section B, Line 15

“Board determines compensation of Chief Executive Officer as part of annual budgeting process for entire organization. Salary of CEO falls within range that would be considered reasonable, given comparability data of other similar organizations. Board president performs annual review of CEO. Note that independent review and approval as well as comparability data in board minutes whenever a salary change is made. CEO determines compensation of other key staff as part of annual budgeting process for entire organization. Salary of these staff fall within the range that would be considered reasonable given comparability data of other similar organizations.”

Form 990, Part VI, Section C, Line 19

“The organization makes its audited financial statements and form 990s available on its website. Other documents are made available upon request.”

Filing and Contact Details

Filer

Filer Name
Phelan Mcdermid Syndrome Foundation
EIN
04-3673104
Phone
9414858000
Address
8 Sorrento Drive, Osprey, FL 34229

Signing Officer

Name
Priscilla Hackstadt
Title
Chief Financial Officer
Phone
7703109572
Signed
2026-03-06

Organization Details

Principal Officer
Priscilla Hackstadt
Formed
2002
Legal Domicile
Fl
Voting Board Members
8
Independent Board Members
8
Employees
12
Volunteers
50
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Program fees include executive search services, genetic curation and counseling, neuropsychiatric counseling, and caregiver support services. Administrative fees include executive search services, audit fees, and fees for preparation of amended forms 941 for 3rd qtr 2020 through 3rd qtr 2021 to claim employee retention tax credits. Fundraising fees include executive search services and fees paid to fundraising/cultivation experts to craft various critical campaigns/appeals.”

Raw XML AppendixShowing 400 of 678 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/Form990PartVIISectionAGrp/PersonNm0Diane Linnehan
IRS990/Form990PartVIISectionAGrp/PersonNm1Lauren Schmitt
IRS990/Form990PartVIISectionAGrp/PersonNm2Shira Johnson
IRS990/Form990PartVIISectionAGrp/PersonNm3Priscilla Hackstadt
IRS990/Form990PartVIISectionAGrp/PersonNm4Rhonda Blumenthal
IRS990/Form990PartVIISectionAGrp/PersonNm5Denise Croden
IRS990/Form990PartVIISectionAGrp/PersonNm6Ben Holocher
IRS990/Form990PartVIISectionAGrp/PersonNm7Lisa Brown
IRS990/Form990PartVIISectionAGrp/PersonNm8Michael Cento
IRS990/Form990PartVIISectionAGrp/PersonNm9Catherine Valcourt-Pearce
IRS990/Form990PartVIISectionAGrp/PersonNm10Rebecca Buchanan
IRS990/Form990PartVIISectionAGrp/PersonNm11Eden Rivera
IRS990/Form990PartVIISectionAGrp/PersonNm12Dr Lori Levi
IRS990/Form990PartVIISectionAGrp/PersonNm13Heidi Grabenstatter PhD
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IRS990/Form990PartVIISectionAGrp/TitleTxt0Chief Operating Officer/Co-interim CEO
IRS990/Form990PartVIISectionAGrp/TitleTxt1Chief Science Officer
IRS990/Form990PartVIISectionAGrp/TitleTxt2Chief Development Officer/Co-Interim CEO
IRS990/Form990PartVIISectionAGrp/TitleTxt3Chief Financial Officer
IRS990/Form990PartVIISectionAGrp/TitleTxt4Chief Executive Officer
IRS990/Form990PartVIISectionAGrp/TitleTxt5President
IRS990/Form990PartVIISectionAGrp/TitleTxt6Vice President
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IRS990/Form990PartVIISectionAGrp/TitleTxt9Director
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IRS990/MissionDesc0The mission of the Phelan-McDermid Syndrome Foundation is to make today better and the future brighter for everyone living with Phelan-McDermid syndrome - from the moment of diagnosis to the delivery of treatments and cures.
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IRS990/ProgSrvcAccomActy2Grp/Desc0CARE (Improving Medical Care): The Organization (PMSF) ensures that individuals with Phelan-McDermid syndrome have access to a robust community of specialists and evidence-based care. We bridge the gap between research and clinical practice by educating professionals, facilitating medical consultation, and expanding our specialized clinical infrastructure. In 2025, we strengthened this ecosystem by establishing our first 11 Phelan-McDermid Syndrome Clinics-including a new multidisciplinary center at Cincinnati Children's Hospital Medical Center-and launched initiatives to grow our Healthcare Provider (HCP) network. Our experts facilitated 22 neuropsychiatric consultation cases, 15 neuropsychiatric referrals, and 50 genetic counseling referrals. Additionally, we served as a primary medical hub, recording over 100,000 views on pmsf.org and overseeing 3,500 downloads of clinical and educational resource documents.
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IRS990/ProgSrvcAccomActy3Grp/Desc0CURE (Driving Research Breakthroughs): The Organization (PMSF) accelerates scientific discovery by centering the patient experience in research, expanding our clinical data infrastructure, and providing critical funding. In 2025, our grant committee awarded the Shannon O'Boyle Memorial Grant to Dr. Jonathan Santoro (Children's Hospital of Los Angeles) to advance vital neuropsychiatric biomarker research. We expanded the PMSF DataHub to 1,500 consented participants and 1,400 curated genetic reports, creating an invaluable resource for pharmaceutical and clinical partners. Furthermore, we directly facilitated participation in the Developmental Synaptopathies Consortium natural history study by providing travel reimbursements to 24 families. Our commitment to global knowledge-sharing was underscored by the PMSF podcast, which experienced 500% growth and reached audiences in 30 countries.
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